Rosetta: cold switch May 2011 & too fast taper Feb 2017

[Rosetta]

Thank you @Sheera.  
 

I’m struggling through the days, but they do seem to each be slightly better than the day before.  I was able to throw food into the instantpot last night.  I made grilled cheese for lunch today.  Simple, easy things — not only can my brain grasp the concepts easily, but I can get them done.  
 

The nights are not easy.  I wake up with a cortisol surge every early morning..  My  jaw, neck and chest are tight.  I’m awake for a couple of hours, and then I fall asleep around 5:30 if I’m lucky.  Sometimes I’m awake for 3-4 hours.  
 

In the day, I get a blue line over my top lip when I’m feeling a lot of muscle tension.  My husband notices this.  Sometimes, my face gets red.  He notices that.  I’m more anxious than usual.  My husband thinks I’m feeling worse than I have in 6 months.  He’s probably right.  My anxiety is at that level.  The pain is not as bad as it was last month.  I’m very, very uncomfortable, but I’m not in much pain from the muscle tension.  The nights are not quite that bad, but the days are, I suppose.  
 

Of course, my husband isn’t feeling well.  We keep feeding anxiety back and forth to each other. My poor daughter.  She’s anxious.  I can’t describe how devastated I am that she is suffering through this. She’s 9 now.  She was almost 6 when I quit Zoloft.  I had no idea I was putting her upbringing at risk.  How will I ever make it up to her?
 

I’m exhausted.  I might take some Benadryl tonight.  I need rest.

[Rosetta]

Today was a better day.  I was not as irritable, clumsy nor did I have much trouble with sudden anger or frustration.  Last night right before bed, I felt pretty anxious.  I wrote yesterday’s post at about that time.
 

I didn’t take Benadryl last night.  I fell asleep rather late, had the usual wake up in the night, but it didn’t last too long.  I didn’t have too much pain.  After my nightly wake-up, I was up until 5:30.  
 

About two days ago I had tummy troubles typical of my period: cramps, diarrhea.  No period though.  

[Rosetta]

Dystonia issue
 

When I wake up in the night my tongue is pressed hard against the roof of my mouth right behind my teeth. I notice this happening in the day sometimes, too.  I think this dystonic action is what causes the pain in my chest, neck and jaw.  Or vice versa — the muscle contractions in my tongue and chest muscles cause my tongue to press against the roof of my mouth.  I also have sleep apnea, and it’s worsened or perhaps caused by this dystonic muscle contraction.

[FarmGirlWorks]

@Rosetta: big props to you for moving through the physical symptoms. God, I really do not think it is unusual to be "worse" than six months ago. The field of anxiety we exist in when our systems are already compromised... it is effecting folks not in WD so why wouldn't it trigger us? Anyways, sending best wishes your way.

[Rosetta]

Thank you, FGW. @FarmGirlWorks  

 

Yesterday was a lot better!  I’m having problems with dystonia, but otherwise yesterday was calm.  What a relief.  
 

I woke up at 3:30, and it’s almost 5 am now.  The lack of sleep is wearing in me.  Last night, I was up from about 2:00 maybe until around 5.  
 

I have a virus of some sort.  The roof of my mouth is raw.  I have to be careful what I eat.  I’m quite tired.  I didn’t even eat dinner last night because I was too tired.
 

I’m getting my walks.  Yesterday, my daughter and I sat by a creek for a while and watched the dragon flies and a water strider.  We saw a cocoon of some sort, too.  The creek is still running, but it’s clogged with algae now.  We are having a heat wave.  It was 90 yesterday.

[Rosetta]

I slept well last night!  It was amazing.  I resisted taking a nap yesterday, and although I woke up in the night, I went right back to sleep.  It was great.  It’s been months since that happened, I think.

 

Today was a pretty calm day, too.  Oh, I wish this could continue.

[ShiningLight]

Californian too here. Could some of this be the change in the weather? I know I'm reacting to it. I think I read that heat adversely affects nerve cell conduction.

 

You are one of several, or many (depending) role models for your daughter. She's going to be around multiple people with multiple different coping styles and abilities. She'll get some good stuff from other people, too. I would imagine that your anxiety and stress around wanting to be a certain way for her may be worse than your actual reactions to things. She is fortunate to have a mother that cares so much and tries so hard.

[Rosetta]

Thank you, Shining Light.  I hope that is true.  I appreciate your support so much.  Thanks for writing to me.
 

Yesterday, I was going along ok, and coping with the homeschooling until I burned something on the stove.  This is all related to dysfunction of the flight or flight response, I’m sure.  How to fix it?
 

The night before last I slept nearly straight through.  Last night I was up for a little while.  I have hot flashes in the night, and then I wake up scared.  I kick off the covers.  Then I get cold.  This has been happening off and on for at least 3 years, but I noticed that it had gone away for at least a few weeks only when it came back.  I woke up scared —to different degrees — practically every night for many stretches, but the hot flashes and cold feeling come and go more.  Sometimes I just wake up scared.

 

Right now, I’m waking up scared every morning.  I know there’s nothing to be afraid of.  I know I’m safe.  It’s just my cortisol awakening.  Sometimes it last as anxiety and sometimes it wears off quickly.  It’s very tiring.  
 

I jogged again yesterday.  I hadn’t done that since the last time I noted it on my thread.  There does not seem to be a difference in the nightly cortisol wake ups.  However, I’m pretty anxious this morning.  It’s not fading.  Could that be related to the jogging.  I do have a zoom meeting with people I have not met before, but I think I’m just attaching my anxiety to that?  Maybe, I just don’t know.  I still get anticipatory anxiety.  I know that.  It happened for my daughter birthday which was on-line.  I really need to jog, and to get my heart rate up.  I can’t keep letting my muscles waste including my heart.  So, I hope the jogging is not contributing to the lingering morning anxiety.  I don’t know that I have any good way to find out.

 

 

[Rosetta]

Today was a good day,  So grateful!

[Rosetta]

The last two days have been much better.  I’m coming out of the wave.
 

I wrote this to someone about how WD causes the brain to allow far too much stimulation to reach our consciousness.  I used to call it feeling overwhelmed.  Now that it’s rare, I can see how different life is with the filter on my brain working again.
 

Being uncomfortable wearing clothes was a part of WD for me, and it is gone.  There is a brain-body connection that is disrupted by this syndrome.  There are many sensations that our brains tune out if we are normal.  I had to wear very soft, loose fitting clothes for a long period of time.  There were a lot of other sounds, sensations, smells, tastes and even sights that were very different than normal.  We do not realize how much of the world our brains filter out and ignore unless this happens to us.  It will go back to normal, but again, it is not necessarily caused by the drug such that removing the drug will fix it.  It is a part of the destabilization of your nervous system.  
 

The breeze on my skin was too much.  The inside of my ears itched.  I think I could feel the earwax moving from the inside to the outside.  Most people don’t know it does that, but as I was researching dysautonomia, I discovered that.  I couldn’t stand the feeling of the breeze on my skin, I couldn’t swim because the water was too cold in any pool or ocean, my eyes itched all the time, etc.
 

Sometimes drugs can cause certain side effects.  For people in WD, any further destabilization by tapering too soon could make the symptoms change or worsen.  We think of side effects from medication as a one way street: remove the drug and the side effects stop.  However, this is a different ballgame.  In a healthy, normal situation the removal of the drug would help.  With dysautonomia, PAWS, withdrawal — whatever you call it — we have to avoid further destabilization.

[Sheera]

So glad you’re feeling better @Rosetta!  I hope your home schooling is going better. We are supposed to have one week left with my 10yo and I called it quits. There is other learning to be done that does not involve a computer. 😊

 

Take Care—

Sheera

[Armorall]

Hi Rosetta,

I wanted to contact you because I know you are also a CT. Also, I've read that you are doing much better than the first year. Did you feel like you started to get worse through the first year before getting better? I don't see that narrative so much, and I feel like, at 9 months, my CNS is destabilizing more as time goes on, not the other way. My tolerance to exercise and and sudden movements during sleep have become more sensitized in reaction. 

Thanks,

Armorall

 

[Rosetta]

Journal entry:  The last two days, I have had more pain from muscle tension in my face and neck.  
 

The days before yesterday was a very bad day.  I got very upset.  Fridays are hard days for homeschooling.  On that day, my daughter plays online with friend from another country at 11:00 am.  The time can’t be changed.  So, we need to get the school work done before 11:00.  I think we need to do what we can before 11:00 and not try again later in the day.  It was later in the day that we had a lot of trouble, and I was upset.  Any attempt to do school work after she sees her friend results in a lot of problems.  Some days, I have so much trouble with my emotions.  It might be better to do the left over work on Saturdays. Hopefully, it will be better.

 

In the middle of the night on the night before last, I woke up with my tongue pressed against the roof of my mouth and in a lot of pain.  Then, one of the lenses fell out of my glasses, and I just started crying.  Eventually, I found the lense, fixed the glasses, and took some Benadryl.  I was able to go back to sleep. Throughout the day yesterday, I felt pain in the same places. Having to read too much to help with the homeschooling may be part of the problem.  I took Benadryl at bedtime.  I slept well.  The nightly wake up was not too bad and didn’t last too long.  I did have my tongue pressed against the roof of my mouth both times when I woke up — in the night and this morning at about 7:15.  
 

I need new glasses with my new prescription.  I wonder if that would help.  The way I have to hold my head to read with my bifocals may be a problem, too.  I can’t use a desktop computer.  I can’t see it from a chair with either part of my bifocals, but it’s a bit easier with the lower part.  So, I suppose the screen needs to be at the level where I would hold a book.  That’s why I use an iPad.  
 

How to get new glasses right now I’m not sure.  Maybe the store is open.  Maybe I can find a way to make it safe.  I have the prescription that I got in August last year.  I don’t need an exam.  I just need to take my frames in, but I don’t have another pair to wear while I wait.  Wearing contact lenses made me dizzy and nauseous the last time I tried them.  I may have to just suffer through that to get this fixed.

[Rosetta]

@Armorall I’ll try to answer you on your thread when I can read again.

[Armorall]

Ok thanks!

[Rozon1]

Hey @Rosetta! Do you feel over all better than you did when this journey first started? I’ve got an 8 year old and I feel the same. I’m doing my best at hiding it from her. Thankfully I think it’s working but I’m definitely not where I want to be with her. I tried messaging you, but I guess you don’t accept messages. Would of loved to talk to you about this 1 on 1 since we seem to be in the same situation. Do you have a Facebook? Either way, I hope you feel better! 

[Rosetta]

I’m feeling better overall.  I have felt nearly normal for the last 4 days or so except for the way I feel for about 1 to 2 hours after I wake up in the morning with a cortisol spike. 

There is a symptom that has returned.  I am having POTS again — I feel dizzy and my vision blacks out when I stand up.  This is a blood pressure issue.  I know it will go away eventually.  I was free of it for a few months recently.
 

My sleep is still not normal. Almost every day I wake up at about 5 or 5:30 feeling scared.  Then, I start to get overheated.  I usually have to kick off the covers until I cool down.  After that, I get quite cold, and have to bundle back up.  It is a while before I feel warm again.  This is a pattern I have observed for many months, probably years, and I think it has to do with cortisol awakenings perhaps.  Maybe it is caused by menopause coupled with cortisol awakenings.  
 

I am getting about 6 or 6 1/2 hours of sleep per night.  I used to go to bed at 8:30 or 9.  Now that we do not get up to go to the school, we are going to bed at around 9:30 or 10.  This is much better because my daughter is tired at that time.  Putting her to bed before she was ready was always very stressful for me.  I would be so tired, and ready to fall asleep, but my system would bevactivated by her anxiety over going to bed.  I would be awake for an extra hour because of that.  Additionally, she is getting more exercise than she did when school was in session.  That helps, too.
 

I’m not getting more rest, but bedtime is less stressful.  I am still waking between 12:30 and 2:30, and staying awake for about 1/2 an hour, at least.  Sometimes it is an hour or an hour and 1/2.  Once in a while I am up until 5:00 or 5:30, and then I can fall asleep again until 8:30 or 9 am.

 

Over the few days, my days have been good.  The pain I was having during my last post subsided.  Emotionally, I’m having a break from the inner turmoil of anxiety that is characteristic of a wave.  In short, this is a window.  It’s nice.

 

I quit jogging after the increase in anxiety.  I may try it again and see if the anxiety comes back.  I walk every day.

 

Yesterday was our last official day of school.  The school is giving up (a week early) on what paltry effort they were making.  All the teacher did was provide us with assignments.  There was no teaching.  We had about 1 to 1 1/2  hours of Zoom per WEEK.  One math assignment the child had done was reviewed over zoom for the entire week.  That was all.  The parents were doing the teaching (or not), and it was very stressful because there was no guidance — not even an email explaining what the point was for each lesson.  
 

It is both a relief and an irritation that our school is done.  The private schools were and are making a strong effort, of course, in order to keep their “subscribers” for next year, but having the kids at home isn’t working well for most people.  I think that, over time, we could get into a routine, and it would get better.  If it takes 8 weeks to settle into a routine, we have made it, and yet now there is no more “school.” C’est la vie, no?

 

I’m very grateful that this whole mess did not happen a year ago when I was still so very sick.  This has been better as a result.  
 

That’s all I can write.  I’m sorry that I can’t answer any questions today.  I can feel the muscles in my jaw tighten.  I would like to have a good day today without pain.

 

 

[FarmGirlWorks]

Hey @Rosetta, good to hear that you're feeling better right now. And OMG: yes, it is so awesome that all this School From Home happened this year not the last two. Dear lord, I am so grateful for you.

[Rosetta]

Thanks @FarmGirlWorks

 

I’m very tired of going down the rabbit hole.  I started slipping again the day before yesterday.  It’s so obvious now.  The difference between being whole and being “off” is clear to me.  It wasn’t at one time.  
 

Last night, the dystonia came back.  I see a correlation between dystonia and being off.  It affects my brain function perhaps? Or it’s a symptom of compromised brain function?  
 

I had a hotflash yesterday evening before I went to bed.  Then, I had a strong hotflash in the night.  I got up to watch TV, and I had warm milk.  I slept until about 8:30 am, and, at that time, I woke up in a panic.   When I woke up I was very anxious.  No St now 1:00 pm.  I’m starting to feel more calm now.  However, I do feel that I’m living in Bizzaro World.  
 

My entire personality changes when I’m in this state.  I’m a different person.  Parts of me are the same, but in terms of relating to others, I’m not who I want to be.  I’m really tired of that.

[cathnz]

On 5/1/2020 at 5:16 AM, Rosetta said:

Yesterday was a little better.  
 

I’m waking up every morning with cortisol surge.  I’m not waking up at 5 or 6 with it.  I’m waking up at about 2:00 or 3:00 feeling a bit scared, but not terrified.  I’m awake for a couple of hours, while my muscles become more and more contracted.  Then, I fall asleep again at about 5:00, and I wake up around 7:30 feeling slightly anxious.  I get up, and I’m ok until someone else in my household gets upset or something goes wrong.  I’m very on edge, but managing until something puts me over the edge.  I used to just sit through this morning time period by myself when my daughter went to school.  That’s how I handled it to avoid an increase in the problem.  I can’t isolate myself now.  

Yesterday, there was a bit less turmoil in my emotion.  I’m was and am still quite clumsy, nervous, and suffering with a lack of control over emotions.  I get confused easily.  I have to choose the simplest breakfast so that can make it without mishap.  I’m dropping things.  
 

I’m aspirating saliva because one side of my throat is partially paralyzed.  My nights are harder again.  I think dystonia is part of what makes them so hard.  I wake up with pain in my jaw, chest and neck from muscle rigidity.  That’s a dystonia type thing, I believe.  I don’t have the twisting feeling very much in my neck  the way I used to.  That is not intense the way it was before.  My forearms and the fronts of my calves ache again.  My left elbow hurts when I wake up.  That had stopped for a while.  At least it’s probably not arthritis that will continue after I heal from WD if it can come and go like that.  The aching in my legs and arms starts just before bed.  It goes away in the middle of the day.  This is a sign of akathisia for me.  It ramps up through the night and explodes at 2:00 in the morning.  Why I sleep again between 5:30 and 7:30 I can’t explain.  The most severe part is after I get up in the morning.  I don’t feel the need to walk around.  That’s never been a part of it.  Maybe because the dystonia is stronger at the time?  I want to hide.  My forearms and the fronts of my calves used to vibrate, and I can feel that now a bit, I think.  If I read, the muscle contractions gets worse not only in my neck and neck, but my arms and legs.  If I watch TV sometimes it gets better.  I’ve been having shooting pains in my right abdomen.  They are very short time wise.  I wonder if this is a muscle spasming.

 

This morning is bad.  I can’t homeschool.  I just can’t.  My emotions are too fragile.  Her frustration causes me to feel sudden fear and anger.  I tried to solve that problem by asking my daughter to do iPad work.  That backfired.
 

I’m confused.  If I’m interrupted I lose my train of thought.  I get very upset when I can’t think straight.  I can’t believe I’m back to this, but at least I know it will go eventually.  I’m getting tired.  I’m afraid of the period of depression that tends to come after one of these waves.  
 

The worst part is the horrible example my child is seeing in terms of dealing with stress.  Even when I’m doing all I can to control my actions, everyone can see that I’m boiling over with rage on the inside.  I try to teach her to breathe and take a break, etc. when she gets upset, and I see her reaction is just like mine would be.  She is even more furious that I suggest she stop and breathe.  She resists it will all her might.  
 

It absolutely kills me.  It doesn’t matter to her upbringing that my body and brain are overreacting to minor stress in a way that is not at all natural.  She’s learning that minor irritations are reasons for high stress.  She’s seeing me react in the wrong way.  I keep talking about what I’m doing “wrong” and trying to educate her about the fact that I must struggle to control my reactions, but I don’t think that’s enough.  I keep apologizing.  She needs to see me calmly approach a problem or calmly walk away from a problem.  My brain just hijacks me, and it’s very unpredictable whether I can react in the right way.  Some days I can.  I’m surprised; my husband is surprised; my daughter is surprised.  It gives me hopes, and then a wave like this comes, and I wish I could isolate.  However, I can’t isolate from my daughter.  That would be equally damaging.  It’s awful.  I don’t want to pass this down to her.

 

One thing that is very clear is that this is a wave.  Whereas I used to have near continuous waves, and it was hard to determine where one ends, this time it’s quite clear.  I was going along ok, and then I started to decline.  I’ve been declining for a few days, maybe a week or more.  I hope I’m at the peak of this wave, but at times they seem to leak and then sink and then peak again over just a couple of days.  

 

I started running again.  I ran three days ago, and I had my worst day the next day.  I tried again the next day to experiment, and I had a better day the next day (yesterday.). I did not run yesterday.  Today is starting off rough.  The iPad program for math that my daughter uses for school is glitchy.  It upset her this morning, and her upset caused me to overreact.  I caught my reaction just barely in time this time.  I started to get upset.  I reacted with increased anxiety, but then I stopped it.  Then, started to cry.   Maybe that’s progress?
 

I used to think jogging created more cortisol.  It’s not supposed to, of course.  It’s supposed to help to control cortisol in a normal person.  I suppose I could be past the point in WD or PAWS when running has a negative effect.  I don’t know.  I do know that I need to exercise, and running is my only option right now.  I haven’t tried to run since Fall if 2016.  While I was running the other day, the amount of energy my muscles received was more than it was back when I tried to run in the Fall of 2016.  That’s when WD was the worst for me.  I could barely walk up the stairs.  My muscle had almost no buy in from my body.  Jogging was a joke.  I was really just shuffling forward taking short steps, but I do believe it increased cortisol, or I did believe that at the time.  Who knows?  The cortisol kept being a problem for years after I stopped jogging.  
 

Having the akathisia come back is really hard to take.  I feel that I need to try running to see if it helps.  I’m afraid it will make things worse, but I don’t know what to do.

 

Thats all I can write.  This is better than before.  I have had much worse times.

@Rosetta I can relate to every word of this about the struggle with regulating our emotions for our kids. It breaks my heart. 

[Mimi79]

Hi @Rosetta

Since I’m on SA, You have helped me tremendously with all your good words of encouragement. I hope you will feel better soon! 
Take care of you!

Mimi

[Rosetta]

Thanks, @Mimi79 and @cathnz for stopping by.

 

My physical problems are better now, but I’m fairly depressed.  I’m still having fearful wake up, a feeling of a shot of adrenaline to my heart when I wake up.  This happens very early in the morning and at 5:00 or 6:30 or so and again when I wake up for the final time.  
 

Dystonia is mild, but worse if I read or use the iPad to type.  I’m beginning to wonder if dystonia affects my brain.  
 

I am more depressed when I am awake in the night than in the day by a wide margin.  In the night I feel life isn’t worth living.  

I cannot imagine having spent so many years trying to recover the normal function of my brain and body and then exposing myself to people who have a strong chance of having coronavirus.  So, I’m very lonely.  I have tried to stay connected to people since the social distancing began, but the people I saw the most before are not making much effort.  They are living their lives as if this isn’t happening.  The person who was my closest friend is having playdates and sleepovers for her kids, going to the beach without masks, having gatherings at her house, etc.  She doesn’t call or text unless she’s responding to my text.  She said that when I’m ready to come back out she wants me to come over.  I’m feeling pretty sad and depressed.  My efforts to see people outdoors with masks are not working out.  Some don’t want to see anyone or don’t have time.  Others would rather see the people who don’t worry about coronavirus, I suppose.  
 

My daughter has a few friends who she sees online.

 

[Mimi79]

Hi Rosetta,

I can understand this feeling of loneliness. This virus isn’t an easy challenge for us who are fragile. 

 

I was telling myself something similar, like I don’t want to catch this virus when I’m finally starting to heal from ADs. 

But I’m working in an oncology center, so of course I haven’t stop working during this pandemic. And everyday I face the risk that one of my patient give me the virus. I think this is why I’ve learned to deal with my fear of it, to be obliged to expose myself to this risk.

 

So now I’m starting more and more to see my friends and family again, but I scrupulously respect the rules, wearing a mask when I can’t be at more than 2 meters, and washing my hand often. 

And I let my girls meet their friends outdoor and do bike rides with them (with respect of distanciation). It makes them so happy to recover a little bit of normality. 

And now, I’m not really afraid to have the virus, I’m really more afraid to give it to my parents who are a lot more at risk of complications then me, a 40 years old healthy women.

We have to remember that all this stuff will end one day, but for now we have to keep going and find new way to live our life. It is not easy, but it is feasible. 
 

I send you big hugs and hope that you will be better soon! 

 

Take care!

 

Anne-Marie

[FarmGirlWorks]

On 6/7/2020 at 7:17 PM, Mimi79 said:

We have to remember that all this stuff will end one day, but for now we have to keep going and find new way to live our life.

 

Well said.

I hear you on the added loneliness of this situation. It is hard.

But like you have told me before, "we've seen waves before and we'll get thru them again."

Your words help me and I hope they remind you that you are not alone.

[Rosetta]

Thank you both @Mimi79 and @FarmGirlWorks

 

I have been through a rough patch this last week.  For many nights I did not sleep well, had many cortisol spikes, and felt terrible in the morning.  I have been in some pain, too, when I wake up after clenching my jaw, but it has not been too bad and did not last for hours.  

One night I had three strong cortisol spikes.  I often wake up with a cortisol spike, then comes a hot flash and afterward I get very, very cold.  I fall back asleep and it happens again.  After the third time, I am quite desperate.

 

The last three nights I have slept more.  I am still having the cortisol spikes.  I wake up in fear.  Immediately after I wake up in a panic I have a memory of a thing I have lost such as pictures of my daughter that had been texted to me, (I lost them when I lost my phone) or pictures that were emailed to me and my email account was corrupted.  I feel terribly sad at these times.

I don’t have SI after a cortisol spike the way I used to, but I do have the thought that life is not worth living.  If I think about that and challenge the thought I can see that life is worth living, but I cannot see that my life will be ever be happy.  After my day begins and I see the sun shining, have breakfast and the anxiety wears off I feel much better.  

 

There are still times in the days when I cannot trust my own mind.  I still get very confused, afraid and fixated on doing something or missing something important.  I get angry, too.  The next day I will be able to see that things were not quite as bad as I thought they were.  I realize at time that what I have been feeling is a lot like the way I felt as a teenager.  The next day I may feel like an adult, but during the time I am so worried I can’t recognize that my brain is betraying me.  I can see this only later.  It’s very, very frustrating.  The things I was worried about are still important to me, but I can understand that they are not as threatened as I thought they were.  It’s all very strange.  
 

I wish I could be the same person — a grown up — most of the time.  My period has a lot to do with these changes and swings. Now that I understand more about dystonia, I realize that injuries to the left side of the brain affect the right side of the body and that dystonia presents in the opposite side of the body from the side of the brain that was I continue to believe that my period is the reason for the rather consistent changes in my symptoms.  I am now aware that the hormones that increase during particular times of the month - estrogen — somehow make dystonia less severe.  Estrogen therapy is a possible treatment for dystonia.  Of course it comes with several risks including the risk of further destabilizing a fragile nervous system experiencing dysautonomia aka withdrawal.
 

I clearly have a frontal lobe issue.  I believe that dystonia interferes with my frontal lobe function, and that dystonia is worse when I have less estrogen available to my system.

 

I have several motor issues as well: dystonia, weakness, strange muscle twitches in my abdomen, and trouble using my eye and hand on the right side.  If I have any seizures they are so mild as to be undetectable to me, a layperson.  However, I have been reading about dystonia recently, and at times an MRI can detect changes that have to do with dystonia.
 

 When I had my MRI for my neck area due to the weakness and numbness in my arm, the technician had to run the MRI three times.  He said that I kept falling asleep.  I was not aware of that, but he seemed to think I was jerking when I fell asleep and this made the MRI useless.  Eventually, he had an image he could use.  The point of the MRI was to look for a nerve that was being compressed in my neck, not for imaging of my brain.  

 

If the dystonia doesn’t improve, I may ask for another MRI to see if there is any detectable brain change in the left side.  I’m not sure it will tell me anything or help me find a solution, but maybe I should think about seeing a neurologist.

 

Menopause is probably interacting with all of this, too.  I don’t have periods very often, but I know when the hormone changes occur because of the dystonia and cognition changes as well as mood changes.  Hot flashes, chills and sleep disturbances also trouble me.

 

I’m tired of this happening over and over again.  I’m so very tired.

 

 

[Erell]

15 hours ago, Rosetta said:

I’m tired of this happening over and over again.  I’m so very tired.

Sad to read this, but also so close to you, having the same feelings.

And this loneliness is a really hard part of WD, truly.    

 

Also very tired of this. But I also know that every time I feel a bit better I strongly think : well , life really worth it !

 

We will get there...and happy. ❤️

         

[ShiningLight]

On 6/13/2020 at 2:08 PM, Rosetta said:

I’m tired of this happening over and over again.  I’m so very tired.

 

 

 

Really, really relate. Wish I had a solution for it.

[Sheera]

@Rosetta on this other side of this wave is a beautiful ray of sunshine. You will see it soon, there is hope. Hugs, my friend. 
 

Sheera

[Rosetta]

Thank you @Erell @ShiningLight and @Sheera

 

I’m not doing any better.  I had about 3 nights of better sleep, and I thought I was on the way out of this wave.  I had one good day in between 2 horrible meltdown days.  Yesterday was very hard with intense anxiety all day.  The day before was not quite as bad as yesterday.  Last night I felt bad enough that I took Benadryl before bed.  This morning was so bad that I had SI.
 

I can’t be a parent when I feel this way.  Sometimes, I lose all feeling for everything (anhedonia).  Mostly, I feel very negative, irritable and worried.  I am just existing, waiting for this wave to pass.

 

I am losing hope that the waves will ever stop coming although I know they have to stop someday.  My cognitive function is very impaired.  I can’t interact with my husband and child without constant misunderstandings.  I’m back to the point that I feel that if I didn’t have a child I would not keep going.

 

All I can do is keep taking walks and avoiding possibilities for conflict.  I have to avoid trying to be a parent because I can’t deal with the normal reactions kids have to being told what to do.  My anxiety is so intense that I have avoid directing my daughter to do things or not to do things.  This is an option because only because my husband can do that, but it’s still less than ideal.

 

I feel very depressed and uncertain.  I can’t trust any of my emotions about anything.   

 

 

[direstraits]

On 6/13/2020 at 5:08 PM, Rosetta said:

I’m tired of this happening over and over again.  I’m so very tired.

I'm so sorry, I feel the same way.

I;ve been off these drugs for 6 years and still never feel normal.

It's a horrible situation.

my thoughts are with you..🤗

[Rosetta]

Thanks @direstraits

[ShiningLight]

Rosetta,

 

Do not be discouraged, warrior. Never forget: as abruptly as this 💩 comes on, so can it dissipate. Do not quit before the miracle!

 

You are even engaging in adaptive, creative coping by taking walks and having your partner interact with your daughter.

 

Courage is getting up and trying, moment after moment. You can be proud that you're doing that, and that's enough for now my friend.

[wantrelief]

I am so sorry this wave has persisted.  You've seen much better times so they will come again - keep hanging in there, my friend.  It is so so hard to keep at this but it will be worth it.  Thinking of you, WR. 💖

[Sheera]

@Rosetta This is not what I was hoping to hear when I checked in. But here is what I know—you are a warrior and you will get through this battle too. You have come so far and like @ShiningLight said the waves can come as quickly as they go. When this wave is over, your baseline will most likely be higher, an exciting and hopeful thought. Hugs to you, friend. 
 

Sheera

[Mimi79]

Hi dear Rosetta,

I totally agree with Sheera,  after very bad waves comes great windows and improvements.  I’ve observed this fact last month, during my worst wave. Until then, you have to hold on with courage, and I’m sure you will.

I hate those waves because they make us lose, in few hours, all our self confidence and hope. All becomes suddenly so dark and hopeless. 

But you are a brave and strong women, this is not the first wave you are facing. You know the beast. You will win over it, one step at a time.

 

You have helped so much people here, including me. You can’t imagine how much you have helped me! When waves hit, I reread the post you wrote on my thread and it brings my hope back.

 

Remember all those good moments you had in the past months. They will come back soon.

Good days are coming...
Take care of you. I send you big hugs! 🤗 

Mimi.

[Rosetta]

Thanks again @ShiningLight.  I am so grateful for all of you coming to my thread.  I feel so alone.  Thank you, @Sheera, @Mimi79 @wantrelief 

This is really hard.  My daughter asked me to smile today.  So, I did, and she said she could tell it was forced.  
 

I barely have a relationship with my husband now.  He stays away as much as possible. He still tries to be kind, but he waits until the afternoon.  If we do interact he’s apprehensive and uncomfortable or worse.  
 

I can barely go anywhere.  We have no friends at all.  He and I have no friends in common, not one.  We have old friends that we never see and haven’t seen in months or years.  He can’t even watch tv with me.  We used to have shows that we both liked.  Instead of coming out of a bad time stronger, we argue and yell a lot.  

 

It’s very hard for him to understand what I’m thinking when I’m having severe anxiety or akathisia.  He takes offense.  He feels personally affronted if I feel anxiety over anything he does.  He says that I don’t love him, and that we aren’t even friends.  He says he stays by me because of the person I used to be and because he knows I am not the real me, but he’s tired and angry.  He says he doesn’t understand why, if I can see what my anxiety is doing to him, why can’t I stop asking for things to be the way I need them to be to quell my anxiety.  All I know how to do is to stop existing.  I try to walk away, but I have no where to go.  My anxiety follows me.  
 

It’s impossible for him to approach me with compassion for more than a few minutes.  In fact, if he is not around, it’s easier for me to stay calm.  What he says and does when I’m upset ramps up the fear.  I keep trying to explain this to him, but it makes him so angry that we have a more difficult time.   I can’t ask for what I need from him.  
 

Sometimes, I try to discuss it with him when there is no crisis, and we work out a plan for what to do when there is a crisis.  I tell him what he said that escalated my feeling of being trapped and what I meant that he didn’t understand.  I explain to him that I wasn’t accusing him of anything; I was only feeling intense, irrational anxiety.  We talk it out calmly.  It appears his eyes have been opened.  He accepts that I wasn’t being critical of him, but that I was reacting to something inside my own mind.  We seem to come to an understanding, but when the moment comes it all falls apart.  Our plan doesn’t work.  He’s reacting the way he does because his father was someone who was unexpected angry, and everyone had to walk on eggshells around him.  My biological mother and my grandfather were the same way.  So, I think we are both reacting to that old threat instead of thinking clearly.  

What is so hard for me is that he can see the signs that I am anxious when I am completely calm and coping well, and those signs upset him.  I can’t win.  I can’t get any credit for coping, and it was the same way with my mother.  She wanted conflict, so if I was coping she kept pushing and pushing until I couldn’t cope any longer.  He doesn’t do that, but he gets upset when I am showing signs of anxiety.  When I drop things, when I mutter, when I look like I am one accident away from getting angry at inanimate objects, he gets upset, and he’s all ready primed for a crisis even if none occurs.  If one does occur, he finds it very difficult to be calm and see that I don’t blame him for what happened to me.  I can’t even have my own private meltdown alone in the kitchen due to a broken this or spilled that or burned hand without it ramping up the tension in the house.

 

I don’t blame him.  I used to before I understood what was happening to me. I couldn’t understand akathisia, of course.  It felt like he was hurting me when my senses were so raw and the slightest noise or even light caused me pain.  Even when I didn’t blame him it seemed that I did because he was there and I was feeling overwhelming sensations.  I knew it couldn’t be my child hurting me.  I don’t think I even understood that I was feeling pain.  It was something other than physical pain; it was something other than emotional pain.  I can’t describe it, but it was pain simply because that’s the only word I can find for it.  It was anxiety, but more than anxiety and more than anxiety mixed with pain.  From the outside I think it looks like anxiety and fear and anger, but those are simply the reactions to akathisia.  They are not akathisia.  In any event, he perceived my reaction as blaming him for what I was experiencing, and he still does although the “pain” I am feeling is, usually, merely anxiety now.  The stimulation of my senses by his actions and words, the tone of his voice, the pitch of his voice, the volume of his voice, even the fear and anxiety in his voice seem to escalate the intensity of my anxiety.  I think the same happens to him.  We feed it back and forth.  We can’t follow our plan for these moments.  I don’t know how to change that.

 

My daughter is sad and lonely and bored.  We can’t even send her to camp.  She can’t be with friends or with other adults who aren’t in the midst of a medical tragedy.  I try to do things with her.  We have been reading folklore and fairy tales and doing science experiments, but my anxiety makes that difficult.  My husband says she is trying to stay away from me.  She doesn’t want to go for a walk with me.  I have to force her.  She hides in her room.  She’s hiding from me.  It’s killing me.  I wish I had never been born.  I really do.

 

I have been worried about how this would affect her for 4 years now — four very important years for her — to her it’s her whole life.  She doesn’t remember all the fun we had when she was under 5.  How I wish someone could have stopped the pharmaceutical companies in the 1990s.  
 

It’s now been almost 20 years since I was prescribed Celexa.  When I think about the way I felt then and how I hoped Celexa would save my life, how depressed and suicidal I was then, it seemed so intense, but that was absolutely nothing compared to this.  My problems then were tied to real life issues like employment and monthly income and emotional abuse in the workplace.  Now, what is causes depression, anxiety and SI has nothing to do with any of those things.  It’s all in my head, and it’s relentless, and irrational.  I’m not even me.